High Dose Patients Worried by CDC Opioid Guidelines

By Pat Anson, Editor

The draft guidelines for opioid prescribing released by the Centers for Disease Control and Prevention (CDC) this month have many chronic pain patients worried – especially those who are taking high doses of opioid pain medication.

The CDC guidelines state that physicians “should avoid” increasing opioid doses over a certain level -- 90 milligrams MEQ (morphine equivalent) a day. And if that dose isn’t high enough to relieve pain? Instead of increasing it, the CDC recommends that doctors “should consider working with patients to taper and discontinue opioids.”

“I am totally freaked out about this new limit,” says Gary Snook, a 62-year old Montana man who has Arachnoiditis, a chronic and painful inflammation of the spinal cord. “The new limit would leave me no option but suicide or becoming a felon.”

Snook needs high doses of opioids not only because of the damage done to his spine by a series of epidural injections for back pain – but because of a genetic condition that makes opioids less potent in his system. Snook takes extremely high daily doses of oxycodone – averaging the equivalent of 540 milligrams of morphine – or six times more than what the CDC recommends.

“I never feel high, still drive. The only side effect I notice from the meds is pain relief,” says Snook, who used to be on even higher doses.

He believes the CDC guidelines would amount to a death sentence for him.

gary snook

gary snook

“I cannot sleep at night and my pain has been elevated from the stress of all this. I used to think doctors were limiting medication to force us into procedures which are not an option for me. Now I believe this is a well-planned extermination of a disadvantaged segment of society,” Snook says.

“The CDC draft and activity is disturbing.  Their guidelines are good, but their 90mg ceiling is a problem,” says Forest Tennant, MD, a pain management specialist who treats Snook. “The word ‘avoid’ in traditional pharmaceutical prescribing usually means don't exceed the dose unless absolutely necessary.  I would like to see the 90mg dosage be preceded or followed with the statement ‘whenever possible.’

"The major issue here is whether legacy patients -- those given high opioid dosages in the past when there were no alternatives -- can continue.  New patients seldom need to go over 90mg as we now have non-opioid neuro-inflammatory and neuro-hormonal therapies."

If the CDC guidelines are adopted, Tennant wonders if other doctors will continue to treat high dose patients like Snook.  Providers will still be able to prescribe high doses “off label” – but many physicians already feel pressured by insurers and the DEA to prescribe lower doses.

“I hear almost on a daily basis of patients being forced to reduce their opioid dose despite being stable and functional for years,” says Lynn Webster, MD, past president of the American Academy of Pain Medicine.

“The suggested limit on opioid dose is without evidence. There are millions of people who have been on much more than 90 mg MEQ for years if not decades who are functional because of their dose. This recommendation is going to cause enormous suffering.”

“One appalling aspect of CDC involvement is simply the fact that this is an agency that deals with communicable diseases -- not intractable pain,” said Tennant. “Gosh knows which ‘experts’ they consulted to arbitrarily pick 90mg.”

As Pain News Network has reported, Physicians for Responsible Opioid Prescribing (PROP) – an advocacy group that is trying to reduce the prescribing of opioids – apparently played a significant role behind the scenes in developing the CDC’s guidelines.

At least five PROP board members, including President Jane Ballantyne, MD, Vice-President Gary Franklin, MD, and PROP founder Andrew Kolodny, MD, are on CDC panels that helped develop the guidelines. Kolodny is chief medical officer for Phoenix House, a non-profit that offers addiction treatment programs around the country.

The CDC’s “Core Expert Group” -- the panel that drafted the guidelines -- is dominated by researchers and government regulators who have little experience in treating pain patients.

“The last thing they want is for true experts to ever testify,” says Tennant.  

“The CDC has been manipulated by payers who want to reduce their costs of opioids and by individuals who just don't understand that there are people who find opioids lifesaving,” adds Webster.

Pain News Network has also reported that only two patient advocacy groups were among the 50 organizations invited to an online “webinar” -- the first and only time the CDC publicly disclosed its prescribing guidelines and sought public input. Other organizations that were invited were physicians’ groups, insurance companies, pharmacists and several non-profits focused on fighting addiction and drug abuse.

The CDC, which is no longer accepting public comment on the guidelines, plans to finalize them by January 2016 – leaving high dose patients like Gary Snook wondering about their futures.

“This is the smallest dose I have been on for a decade and it is a struggle. I have no side effects from these high doses and am always alert and coherent. I never share my medication as I would never make it until the end of the month,” he said. "I am suicidal on lower doses, but can have a life at these levels but have no hobbies and can't work although I would love too."